Long-Term Care At Home Without Breaking The Bank

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Couple on bridge

The vast majority of older adults choose to receive long-term care at home and not in nursing homes. But many people forget to make plans for this very important expense.

Nor do they see long-term care insurance as a viable option — because it is expensive and often seen as protection against the cost of only nursing home care.

That should change, some experts contend. If the long-term care insurance industry focused more on helping people cover home-based services, they argue, policies would be more affordable, and potentially appealing.

Long-term care, for most people, is a home care problem. It makes sense to insure people for the likelihood of where care is going to be needed first — which is at home.

Genworth, one of the nation’s leading long-term care insurers, acknowledged that this position is supported by industry claims data.

“Primarily, we are seeing people utilizing home care and a smaller percentage using nursing home care,” said Beth Ludden, Genworth’s senior vice president for long-term care insurance products.

“People think, ‘While I might start out needing care at home, eventually I’ll need to be in a facility,’” Ludden continued. “But that’s not something we see in our data. For the most part, people are able to stay at home for the whole time.”

Currently, more than 6 million older Americans are thought to have a “high need” for long-term care, according to a report from the U.S. Department of Health and Human Services. That’s defined as requiring daily assistance with two activities (eating, bathing, toileting, dressing, continence or transferring from a bed to a chair) that lasts at least 90 days or a need for substantial assistance due to severe cognitive impairment.

About 52 percent of adults reaching age 65 today will need these services — 26 percent for two years or less; 12 percent for two to four years; and 14 percent for more than five years, the HHS report projected.

Yet fewer than 10 percent of older adults have purchased long-term care insurance, which has somewhat declined in popularity as premiums skyrocketed and insurers exited the market over the past decade. Whether the industry can fix its major problem — affordability — remains to be seen.

From a consumer’s perspective, if the goal is covering several years of home-based care, not nursing home care, a person can purchase a less expensive policy without all the bells and whistles that drive up costs.

A 55-year-old couple buying a policy of this kind — say, $4,000 a month in benefits for each person, for a maximum of three years, with a 1 percent compounded annual inflation protection provision — from a major insurance company would pay $2,380.05 a year in premiums. It’s common for policyholders to pay premiums for 10 or 20 years before claiming benefits. Terms are similar in most states.

How much help in the home might this policy provide?

According to 2016 data compiled by Genworth, the average annual cost for care provided by a home health aide was $46,332, compared with $82,128 for a semiprivate room in a nursing home. That translates into $3,861 a month, for 44 hours of home care a week — the equivalent of slightly more than six hours of care, seven days a week.

That might not be enough for seniors with serious, disabling illnesses, but it can provide much-needed relief to unpaid family caregivers who could otherwise be on call nonstop.

What happens if someone ends up needing nursing home care?

People might consider what is known as a “qualified long-term care partnership policy” — a plan available in every state except Alaska, Hawaii, Illinois, Massachusetts, Mississippi, New Mexico, Vermont and Washington, D.C. 

These little-known insurance products are designed to help consumers preserve their assets if they become seriously ill, need nursing home care and seek to become eligible for Medicaid, which pays for nearly half of nursing home costs in the U.S.

To qualify for Medicaid, most states require that an individual have no more than $2,000 in assets; couples are allowed to have up to about $120,000, so that a well spouse does not become impoverished. With a partnership policy, every dollar received in long-term care benefits is exempted from Medicaid’s asset test and protected from seizure by the state.

In other words, if you get $200,000 in benefits from a partnership policy and your state has an asset limit of $2,000 for Medicaid, you can keep $200,000 in assets plus the $2,000 allowed and still meet your state’s asset test.

Partnership policies do not guarantee Medicaid eligibility and a person would still have to meet whatever income standards their state sets for Medicaid. (Many, but not all states, allow people to “spend down” to qualify, using their income to pay for institutional care.)

Alan, 61, of Las Vegas, purchased a partnership policy three years ago because it allows him to retain control of his financial assets, even if he needs caregiver services. Another plus: The policy permits him [if he decides to stay at home] to take a certain amount of the monthly amount and give it to someone he chooses to provide care for him, even if that person is a family member.

There is no reliable national data about how many people with partnership policies end up going on Medicaid to cover nursing home care. Nor is there good data about the number of these policies that have been sold or the benefits paid out to date.

David Guttchen, who directs the Connecticut Partnership for Long-Term Care, the first such program in the country, is skeptical about policies with benefits that will cover only a portion of expected costs. (Four states, including Connecticut, were the first to launch partnership programs and have special rules.)

“A person absolutely needs to know what the average home care and nursing home costs are for their state, to get a sense of what the exposure might be,” he said. “If you don’t buy meaningful benefits, you’re wasting your premium.”

If a person is able to cover a good amount of home care but the policy does not cover nursing home care, some protection is gained, for a while, but a person could still pay an enormous amount out-of-pocket going forward, if Medicaid is not an option.

It’s a gamble because people cannot be sure what kind of care they will need in the future, or for how long, or what the future of Medicaid will offer. Before buying any policy, consult with an elder law attorney and an independent insurance adviser.

Does Your Insurance Cover Alzheimer’s Care?

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Senior man sitting on a wheelchair with caregiverOne in eight individuals 65 and older suffers from Alzheimer’s disease –quite a sobering statistic for the growing number of baby boomers rapidly crossing that age threshold. And the costs can be an “overwhelming financial burden,” says Carol Steinberg, executive vice-president of the Alzheimer’s Foundation of America.

Private and government insurance programs may cover some costs. Here’s a primer on your options.

Medicare

Many people are shocked to discover that Medicare does not cover the long-term custodial care that Alzheimer’s patients need. Custodial care is the non-medical care associated with activities of daily living, such as bathing and dressing.

Medicare does cover limited care in a nursing facility or at home. For home care, the patient must require skilled-nursing care or physical or occupational therapy to help with the recovery from an illness or injury — not to help an Alzheimer’s patient with daily-living activities. “One of the most difficult situations is when a loved one needs personal or custodial home care, but Medicare will only cover that if there is some type of skilled-care need,” says Frederic Riccardi, director of programs and outreach for the Medicare Rights Center, an advocacy group.

At-home services in most cases can be provided for fewer than seven days each week or less than eight hours each day over a period of 21 days or less. Limited custodial care could be provided during these visits — perhaps if an Alzheimer’s patient treated by a registered nurse for a broken hip needs help bathing. Medicare pays the cost of a skilled-nursing facility, but only to provide continuing treatment following a hospital stay of at least three days. Skilled care in a facility is limited to 100 days.

While Medicare offers little by way of custodial care, it does provide diagnostic and medical treatment that Alzheimer’s patients need. The new annual wellness physical exam, which is free and part of the health care law, includes testing for cognitive impairment. “This is a critical, yet hardly known, provision,” Steinberg says. Medicare also covers visits to a geriatric assessment clinic.

Alzheimer’s patients and their families need to carefully choose a Medicare Part D prescription-drug plan or private Medicare plan. Alzheimer’s medications are generally covered under Part D, but plans vary regarding co-payments. The Alzheimer’s Association offers a guide about coverage for common Alzheimer’s drugs.

If you choose a Medicare Advantage plan, make sure your neurologist and other physicians you see often are covered as in-network providers. Otherwise, you will pay higher out-of-pocket costs or ask about Medicare supplement plans.

Long-term-care insurance

These policies provide coverage for the custodial care that Alzheimer’s patients usually need. Benefits typically trigger if the patient needs help with at least two activities of daily living or if a doctor provides evidence of cognitive impairment. Because most people with Alzheimer’s receive care in their own homes, look carefully at the policy’s home-care requirements. Typically, a patient must wait 60 or 90 days before benefits begin. But policies differ on when the clock starts ticking, which could be a big headache for caregivers. 

Some long-term care insurance policies start the 60-day waiting period on the day the doctor certifies the cognitive impairment — and benefits trigger 60 days later. But other policies count only the days a patient receives care from a qualified caregiver during the waiting period. If the caregiver visits two days a week, the policy only counts those two visits toward the 60-day waiting period — and benefits will not trigger for 30 weeks. In the meantime, the family has to pick up the tab for the caregiver.

Before you hire a caregiver, check the policy’s fine print on the type of caregiver the insurance company will cover. Some policies pay for any caregiver who is not a family member, while others only pay for licensed caregivers who work for an agency. Some families who hire an unlicensed caregiver later discover that the caregiver doe not qualify under the policy.

Do not expect a policy to pick up round-the-clock home care. Daily coverage is based on the daily benefit. A policy with a $200 daily benefit, for example, will likely cover the cost of eight to ten hours of a home health aide. If a family caregiver cannot fill in the gap, a nursing home may be a better option.

You cannot use more than your daily benefit in a day, but you can stretch your daily benefit over longer periods. Say you choose a benefit period of three years, at $200 a day. If you only use $100 a day, your coverage can last for six years. Some policies cover adult day care, which can cost a lot less than daily caregivers. “Many adult day services specialize in care for those with Alzheimer’s disease and similar disorders,” says Kathy O’Brien, senior gerontologist with the MetLife Mature Market Institute.

An alternative and more cost-effective option for long-term care insurance in today’s expensive health care environment is a short-term custodial care policy.

Medicaid

This program, whose costs are shared by federal and state governments, is the primary payer of long-term-care services for the elderly. Unlike Medicare, it provides custodial care for Alzheimer’s patients. Custodial care typically is provided in Medicaid-eligible nursing homes, but many states’ Medicaid programs now pay for home care and sometimes adult day care or care in assisted-living facilities, says O’Brien.

 

The downside: You need to be virtually impoverished to qualify. Many people end up qualifying after spending their retirement savings on care. While state laws differ, generally you cannot have more than $2,000 in countable assets, including investments. A spouse who lives at home can generally keep about $113,000. You’re allowed to keep your home, car and assets in certain kinds of trusts. (Visit www.medicaid.gov to find eligibility requirements in your state.)

To protect more of your assets, you can buy a state-approved long-term-care policy that is “partnership” eligible. The policy would allow you to qualify for Medicaid without having to spend almost all of your money first. For example, if you buy a partnership policy that covers $200,000 of care, you would pay out of pocket until you have $200,000 left and still qualify for Medicaid. Go to the National Clearinghouse for Long Term Care Information to see if your state allows these policies.

 

 

 

 

Senior Dental Insurance: A Rare Commodity

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couple-on-bridgeAging can take a toll on teeth, and for many seniors paying for dental care services is a serious concern because they cannot rely on their Medicare coverage. 

 Lower income seniors, in particular, are struggling. More than a third with incomes below 200 percent of the federal poverty level (about $23,000 annually) had untreated tooth decay between 2011 and 2014, according to an analysis of federal data by the American Dental Association.

“What ends up happening is that almost everybody, when aging into 65, is basically on their own and obligated to pay for dental care out of pocket,” said Dr. Michael Helgeson, chief executive officer of Apple Tree Dental. Apple Tree is a Minneapolis-based nonprofit organization operating eight clinics in Minnesota and California that target underserved seniors, as well as mobile units that provide on-site dental care at nursing homes and other facilities.

Traditional Medicare does not usually cover dental care unless it is related to services received in a hospital. Medicare Advantage Part C managed care plans generally provide some dental care, but the coverage can vary, and is often minimal, dental advocates say. The plans often are “a loss leader,” said Dr. Judith Jones, a professor of dentistry at Boston University. “The plans are meant to attract people, but the coverage is really limited.”

In a way, seniors are victims of dentistry’s success. Regular visits to the dentist, along with daily tooth brushing and water fluoridation, have all contributed to improvements in oral health. In the first half of the 20th century, by the time people reached their 30s or 40s many had already lost all their teeth, Helgeson said, while today more than 60 percent of people in nursing homes still have at least some natural teeth.

But teeth need tending. Without regular dental care, tooth problems can cause pain and limit how much and what type of food people are able to eat. Similarly, gum disease can loosen teeth and allow bacteria to enter the body. A growing body of research has linked treating periodontal disease with lower medical costs for diabetes and heart disease, among other conditions.

People’s lives are affected in other ways by their oral health. “You use your mouth to eat and kiss and smile and interact socially,” said Jones. “It’s a source of great embarrassment and suffering for many adults without access to care.”

With limited income and/or no insurance, seniors may skip visiting the dentist regularly, even though many report that their mouths are dry and painful, and they have difficulty biting and chewing, not to mention avoiding smiling and social interaction if they have missing or damaged teeth.

Medicaid, the state-federal program for lower income people, covers dental care for children in every state, but coverage for adults is limited. Most states cover emergency dental care, but eight states offer no adult dental benefits at all, according to a study by Oral Health America, an advocacy group.

Even trying to purchase private dental insurance, which typically covers a few thousand dollars worth of dental care, may not provide a good value, said Marko Vujicic, vice president of the American Dental Association’s Health Policy Institute. “When you add up the premiums and copays it is not worthwhile for the vast majority of adults to have dental insurance,” he said.

Seniors with traditional Medicare spent $737 on average out-of-pocket on dental care in 2012, said Tricia Neuman, director of the Program on Medicare Policy at the Kaiser Family Foundation. 

But the figures may be much higher for people who need major restorative work.

“I know people who are spending sometimes more than $10,000 on what they consider essential dental care, like implants, none of which is covered,” Neuman said.

Seniors with limited means have few options for help affording dental care. Federally qualified health centers may provide geriatric dental services on a sliding-fee scale, and clinics like Apple Tree help a limited number of seniors who live in their service area. But they’re a band-aid, said Jones.

She and other advocates want Medicare to add a dental benefit to Medicare Part B. Their proposal would provide a basic bundle of diagnostic and preventive services through a premium increase, and seniors would only be responsible for copayments if they need pricey restorative work like crowns and bridges.

“Over the years, there has been some interest in expanding Medicare to include dental coverage,” Neuman said. But a dental benefit has faced stiff competition from other priorities, including adding a prescription drug benefit in 2006 and preventive coverage under the health law in 2010.

But some people think this time might be different. “There are 250,000 people every month who are turning 65, and 30 percent of dentists say they could use more business,” said Beth Truett, president and CEO of Oral Health America, which supports the proposal. “It’s a perfect storm.”

 

New Medicare Law for a Patient Loophole

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Long-Term CareLast November, after a bad fall, 85-year old Elizabeth Cannon was taken to a hospital near Philadelphia for seven days of observation, followed by nearly five months in a nursing home for rehabilitation and skilled nursing care. The cost: more than $40,000.  

The hospital insisted that Elizabeth had never been formally admitted there as an inpatient, so under federal rules, Medicare would not pay for her nursing home stay. The money would have to come from her pocket.

The experience of Elizabeth and thousands like her inspired a new Medicare law — in force as of Saturday, August 6, 2016 — that requires hospitals to notify patients they may incur huge out-of-pocket costs if they stay more than 24 hours in the hospital without being formally admitted. Because of the Notice Act, passed by Congress last year [2015] with broad bipartisan support, patients can expect to start receiving the notice in January [2017].

“It was extremely distressful to my mother, who was frugal her whole life,” said Cynthia Morgan, Elizabeth’s daughter. Elizabeth had questioned why Medicare would not pay for her care after she paid into Medicare for so many years. Elizabeth died in April 2016.

Hospitals have been keeping patients like Elizabeth in limbo due to fear of being penalized by Medicare for inappropriate admissions. While under observation, patients can be liable for substantial hospital bills, and Medicare will not pay for subsequent nursing home care unless a person has spent three consecutive days in the hospital as an inpatient.

Time spent under observation does not count toward the three days, even though the patient may spend five or six nights in a hospital bed and receive extensive hospital services, including tests, treatment and medications ordered by a doctor.

Under the new law, the notice must be provided to “each individual who receives observation services as an outpatient” at a hospital for more than 24 hours. Medicare officials estimate that hospitals will have to issue 1.4 million notices a year.

“The financial consequences of observation stays can be devastating for seniors,” said Senator Susan Collins, Republican of Maine and the chairwoman of the Senate Special Committee on Aging.

Senator Benjamin Cardin, Democrat of Maryland, the chief sponsor of the Senate version of the legislation, said it would “save seniors from the sticker shock that comes after they are discharged from the hospital and realize that Medicare will not cover the cost of care in a skilled nursing facility.”

The median cost for a private room in a nursing home is roughly $92,000 a year, according to a survey by Genworth Financial. Medicare covers up to 100 days of skilled nursing home care at a time.

The text of the standard “Medicare outpatient observation notice” is subject to approval by the White House Office of Management and Budget. In its current form, the notice to beneficiaries says: “You are a hospital outpatient receiving observation services. You are not an inpatient.” And it explains that Medicare will cover care in a skilled nursing home only if the beneficiary has had an inpatient hospital stay of at least three days.

Patients can then consult their doctors and may ask to be reclassified as inpatients.

Hospitals have found themselves in a dilemma. They increased their use of “observation status” in response to close scrutiny of their billing practices by Medicare auditors — private companies hired by the government to review claims. In many cases, these companies challenged decisions by doctors to admit patients to a hospital, saying the services should have been provided on an outpatient basis. The auditors then tried to recover what they described as improper payments.

Doctors and hospitals said the auditors were like bounty hunters because they were allowed to keep a percentage of the funds they recovered.

But patients will now, at least, be better informed. The Senate Finance Committee explained the reason for the law this way:

“The number of Medicare beneficiaries receiving outpatient observation care over the last several years has been steadily increasing. Some beneficiaries are surprised to learn that although having received treatment overnight in a hospital bed, the beneficiary was never formally admitted as an inpatient but was instead a hospital outpatient.”

Federal officials acknowledged that Medicare beneficiaries sometimes had to pay more as outpatients under observation than they would have paid if they had been formally admitted to the hospital and received the same services as inpatients.

The administration issued rules to carry out the new law. The purpose, it said, is “to inform beneficiaries of costs they might not otherwise be aware.”

“Even if staying in a hospital overnight, the status might still be considered outpatient,” the administration said in a publication for beneficiaries.

Consumer advocates and nursing homes support the new requirement.

“Medicare beneficiaries are spending more and more time in the hospital without being formally admitted,” said Joyce Rogers, a senior vice president of AARP, the lobby for older Americans, adding that this “can expose beneficiaries to unexpectedly high out-of-pocket costs amounting to thousands of dollars.”

Mark Parkinson, the president and chief executive of the American Health Care Association, a trade group for nursing homes, said, “Patients often have no idea what their status is in a hospital and observation stays impose a significant financial burden on seniors increasing the likelihood of turning to Medicaid.”  

“The new law is an important first step, but Congress and the administration need to do more to protect beneficiaries,” said Judith Stein, the executive director of the nonprofit Center for Medicare Advocacy.

Under the law, hospitals can still keep Medicare patients in observation status, and some of the patients will be responsible for nursing home costs. Twenty-four senators and more than 120 House members are supporting bipartisan legislation to address that concern. Under that bill, time in a hospital under observation would count toward the three-day inpatient stay required for Medicare coverage of nursing home care.

What’s the Big Deal About Drug Prices?

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David Blumenthal MDDavid Blumenthal, MD (pictured) says in this article that Americans believe in markets. Some think that markets should govern health care, just like other economic sectors. In fact, a common critique of the current health care system is that the government is too involved, and should get out of the way so free markets can work their magic on costs and quality of care. That’s one rationale for so-called consumer-directed health plans that impose high deductibles and copayments to make patients more cost-conscious.

So, what’s the big deal when a private company raises the price of a drug, or introduces a pricey new one? Imagine if John Deere marketed a new tractor for $100 million dollars each, or Intel a new chip for $1 billion a pop, or General Electric a new jet engine for $2 billion. Analysts might scoff at the company’s bad judgment. The product might not sell. Stock values might fall. CEOs—or more likely, some underlings—might get fired. But you wouldn’t hear politicians and editorial pages calling for the regulation of tractor or chip or jet engine prices, or for insurance to cover their escalating costs.

Why all the uproar about drug prices? The answer: humans. People feel differently about drugs, and many other health care products, than they do about the myriad of other things that get bought and sold, without controversy, in normal markets. Lots of Americans are just deeply uncomfortable with the idea that other humans could die or suffer needlessly because they couldn’t afford a pill—just a little pill, for heaven’s sake!—that could have made them better. (Some also really resent apparent profiteering by companies exploiting an unfair edge, but that is a slightly different issue.) When it comes to life, death, and suffering, many Americans act as if they think market efficiency is less important than caring for others.

And it’s precisely this attitude that has made many of the governmental programs involved in health care—Medicare, Medicaid, the VA health system, community health centers—so complicated and seemingly resistant to market-oriented reforms like raising Medicare premiums or introducing more cost-sharing into Medicaid. Government is involved in health care because Americans deeply desire the health care protections government provides.

Markets are a human creation, and humans can limit or disband them. When it comes to drugs—and health care goods and services generally—Americans seem willing to do just that.

Now there are some other reasons why drugs and their prices may be different from other products. One is patent law. New drugs often enjoy legal protections from competition if they can show that they meet certain standards for novelty and usefulness. These legal protections are time limited, but while in place, the resulting monopolies allow companies to charge pretty much whatever they want.

Sometimes other companies produce similar products based on different intellectual property (with their own patent protections) and competition works to bring prices down (though not necessarily make them affordable). But other times—and especially with complex new biological agents—these competing products don’t materialize, at least for some time.

Another difference between drugs and other products sold in free markets is the role of federally supported research. The federal government spends more than $30 billion annually on research and development fostering the discoveries that lead directly or indirectly to many of the new drugs marketed by private companies. Much of the federal money goes to universities and academic medical centers that are nonprofit and publish their results in scientific journals that are available for all to read virtually free of charge. Private companies use this new knowledge to inform drug development. Occasionally, academic inventions are licensed to private companies for additional development at little or no cost and modest future royalties for the academic centers. But in neither case are there provisions for assuring that public has access to the resulting drugs. Thus, the taxpayers who supported the critical R&D underlying some high-priced new drugs may be unable to afford the products that their investments helped to create. To many, this seems fundamentally unfair.

A third special characteristic of drugs is that government buys a lot of them for the elderly, disabled, poor, and veterans. This means that high prices could raise taxes.

Still, these three peculiarities of drugs and drug markets do not seem sufficient to explain the outrage that recent drug-pricing decisions have generated. After all, patents play a role in other economic sectors—in the chip and software markets, for example—without leading to calls for government intervention. The government supports R&D in the nonbiological sciences that result in new products as well.

The government’s role as a drug purchaser has also played a part in drug pricing discussions, and revived talk about allowing Medicare to negotiate better prices with drug companies. This is partly driven by concerns that the government may no longer be able to provide the drugs to all who need them.

In the end, the specialness of drugs comes down to how people feel about other people, and their own and their loved ones’ vulnerability to the killers and cripplers that we all fear. People are angry about drug prices because they think they’re just inhumane.

New Regulations: Modernizing Nursing Home Care

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After nearly 30 years, the Obama administration wants to modernize the rules nursing homes must follow to qualify for Medicare and Medicaid payments. There are hundreds of pages of proposed changes that cover everything from meal times to the use of anti-psychotic drugs to staffing.

Some are required by the Affordable Care Act and other recent federal laws, as well as the president’s executive order directing agencies to simplify regulations and minimize the costs of compliance.

“Today’s measures set high standards for quality and safety in nursing homes and long-term care facilities,” said Health and Human Services Secretary Sylvia M. Burwell. “When a family makes the decision for a loved one to be placed in a nursing home or long-term care facility, they need to know that their loved one’s health and safety are priorities.”

Officials announced the update at the recent White House Conference on Aging.  The once-a-decade [10 years ago] conclave set the agenda for meeting the diverse needs of older Americans, including long-term care options. July 30, 2015, also marked the 50th anniversary of the Medicare and Medicaid programs, which cover almost 125 million older, disabled or low-income Americans. Medicare and Medicaid beneficiaries make up the majority of residents in the country’s more than 15,000 long-term care facilities.

“The existing regulations do not even conceive of electronic communications the way they exist today,” said Dr. Shari Ling, Medicare’s deputy chief medical officer. “Also there have been significant advances in the science and delivery of health care that just weren’t imagined at the time the rules were originally written. For example, the risks of anti-psychotic medications and overuse of antibiotics are now clearly known, when previously they were thought to be harmless.

The proposed regulations include a section on electronic health records and measures to better ensure that patients or their families are involved in care planning and in the discharge process. The rules would also strengthen infection control, minimize the use of antibiotic and anti-psychotic drugs and reduce hospital re-admissions.

Revised rules would also promote more individualized care and help make nursing homes feel more like home.  For example, facilities would be required to provide “suitable and nourishing alternative meals and snacks for residents who want to eat at non-traditional times or outside of scheduled meal times.”

Residents should also be able to choose their roommates.  “Nursing facilities not only provide medical care, but may also serve as a resident’s home,” the proposed rules say. “Our proposed provision would provide for a rooming arrangement that could include a same-sex couple, siblings, other relatives, long term friends or any other combination” [as long as nursing home administrators] “can reasonably accommodate the arrangement.”

Consumer advocates are likely to be disappointed that officials are not including recommendations to set a federal nurse-to-resident ratio.

However, the proposed changes would require that nurses be trained in dementia care and preventing elder abuse to better meet residents’ needs.

“We believe that the focus should be on the skill sets and specific competencies of assigned staff,” officials wrote in the proposed rules, “to provide the nursing care a resident needs rather than a static number of staff or hours of nursing care that does not consider resident characteristics.”

Nursing homes will be required to report staffing levels, which Medicare officials said they will review for adequacy.

“It’s a competency approach that goes beyond a game of numbers,” said Ling. “If residents appear agitated, figure out why, get at the cause of the problem,” she said, instead of resorting to drugs to sedate residents.

Advocates for nursing home residents argue that because of inadequate staffing, residents with dementia are often inappropriately given anti-psychotic drugs, even though that can be dangerous for them. The new rules would help control the use of these drugs by requiring the facility’s pharmacist to monitor drugs that are prescribed for excessive periods of time or other irregularities and require the resident’s physician to address the problem or explain in the resident’s medical record why the medication is necessary.

“We don’t have enough nursing staff,” Toby Edelman, a senior policy attorney at the Center for Medicare Advocacy, said before the rules were released.  Federal law requires only one registered nurse on the day shift for a 20-bed facility or for a 500-bed facility, licensed practical nurses around the clock and sufficient staff to meet residents’ needs, she said.

“We don’t look at the specific staffing positions per se,” said Greg Crist, a spokesman for the American Health Care Association, which represents 11,000 skilled nursing facilities. “We look at the needs of the individuals when determining staff levels, and that is best addressed in the resident’s care plan.”

Although there are also no provisions addressing enforcement in the proposed rule, Ling said  it “will permit detection of violations to enable enforcement by lessening the noise.”

“The biggest problem is that the rules we have now are not enforced,” said Edelman.  “We have a very weak and timid enforcement system that does everything it can to cajole facilities into compliance instead of imposing penalties for noncompliance.”

A report by the Center for Medicare Advocacy found last year that often some serious violations were not penalized.

“Once the new rules are finalized, they will be added to the items nursing home inspectors check,” Ling said.

Awake And Safe All Night Despite Dementia

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In their Manhattan apartment, Josephina is trying to coax her 84-year-old mother, Brunhilda, to get ready to go out. As she does most nights, Josephina makes up a story to get her mother, who has dementia, to cooperate.

In Spanish, Josephina asks her mother if she would rather go to Miami or the Dominican Republic. Her mother says she wants to go to the Dominican Republic, and then Josephina helps her mother gather her things and escorts her downstairs to a waiting van. The driver will take her mother to the Elderserve At Night program at the Hebrew Home At Riverdale in the Bronx. It’s a kind of day camp – but at night, for people like Brunhilda who suffer from Alzheimer’s disease.

Josephina says her mother was once a proud, hard-working immigrant who raised four children on her own, but she has changed. “Her memory has been totally lost. She’s very disoriented,” Josephina says. “She doesn’t communicate at all.”

For months, Brunhilda would sleep during the day and be up much of the night wandering around the apartment. Her daughter was too afraid to sleep – afraid her mother might fall and hurt herself or even try to leave the apartment.

“She wanted to sweep the floor. She wanted to watch TV. She wanted to clean the bathroom,” Josephina remembers. “She wanted to go out. This is at one, two o’clock in the morning.”

But now Josephina is finally getting some sleep – and her mother is being well cared for, along with about 40 other people, seven nights a week. Activities may include arts and crafts, cooking, yoga or Zumba, and even live performances. On the night we visited, Juan Ortega played American and Spanish favorites on his synthesizer.

Though it looks like entertainment, each activity has a therapeutic benefit for memory-compromised people, says Deborah Messina, who runs the overnight program. She described a common problem among dementia patients known as “sundowning.” It is thought to affect about 20 percent of Alzheimer’s patients.

“Their day is our night and vice versa, and they are confused about it,” Messina says. “It is usually at dusk where an agitation comes, a confusion comes.”

Many people with dementia are more alert at night than they are all day – just when their caregivers need to sleep. Rather than try to alter this mismatch, Elderserve At Night embraces it.

The program is the brainchild of David Pomeranz, the executive director of the Hebrew Home, who opened the program in 1996. He says the idea came to him after hearing heartbreaking stories from struggling families.

“People were sleeping in front of doorways because they were concerned that mom or dad would wander out of the house,” Pomeranz says.

Those families desperately needed a safe place for their loved ones at night – and a decent night’s sleep. And the Hebrew Home set out to meet that need.

It’s a similar philosophy – to meet clients’ needs wherever they may be – held by the therapists and social workers who now staff Elderserve. “Here, their behaviors are normalized,” Pomeranz explains.

“Everything is OK. Activities are structured for them to be successful. They eat, they relax – they can be themselves. To us, this is who they are. We’re not the family members who are dealing with that incredible loss of seeing someone who was and isn’t any more.”

The program is covered by some private insurers and by New York Medicaid, the federal-state program for poor and disabled people. To the extent that it can keep people out of nursing homes, it can save money.

Medicaid pays a typical nursing home in New York about $320 per day versus $200 for the overnight program. But so far, few, if any, other overnight programs exist solely for people with dementia. Pomeranz thinks the idea hasn’t caught on with other nursing homes because it is difficult to find staff who are willing to work the overnight shift. It was also important to get Medicaid and other insurers to reimburse for the program, and that funding has not been pursued in every state.

Elderserve At Night tries to serve its clients even as their conditions worsen. Next door to the room where Brunhilda and others are dancing and enjoying the live music, it feels like another universe. The music is soft, the lights are low and a subtle scent of lavender is in the air. People with more advanced disease spend the evening here. Some are sitting around a table, each with a caseworker, who helps them work with blocks and basic puzzles.

Several other people are slumped in wheelchairs, getting hand massages from the social workers. Though their faces look expressionless, they seem calm. For people with advanced dementia who might otherwise become agitated at night, this room is a sanctuary, says Messina.

“We’re engaging them on their level. And being able to do that might be through touch, it might be through sound, it might be through scent,” she says. “It works for them. It gives them a sense of serenity.”

When the sun comes up tomorrow, all the clients will be given breakfast and everyone here will return home. Brunhilda will take the van back to her apartment in upper Manhattan where she will be greeted by her daughter before she leaves for work. Josephina says she doesn’t know exactly what happens during her mother’s nightly sojourns, but she is grateful.

“She was very weak when she started there. We had to carry her up and down [the stairs]. But now she walks up and down. She walks to Broadway,” Josephina says. “She would not react to any of the conversation. Now she does. She’s a totally new person. I would say she’s 200 percent better.”

Josephina says the program helped to improve her mother’s life and her own life as well. But Brunhilda was battling congestive heart failure, and she succumbed to the disease a few months after we reported this story.

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